Friday, February 18, 2011

Why Can’t We All Just Get Along

This is a continuation of a previous discussion between MJ and myself in my last post. This issue has cropped up previously and I realized I wanted to prioritize the discussion and make it a little more accessible to others. My apologies to MJ for the change in format.

“That first part is as important as the second because until the community stops tearing itself apart it will be hard to move forward.”

Let’s say the Autism Hub and the AoA merged tonight and became “The Age of the Hub” or something like that. Do you really expect that the AoA editors will lay off vaccines? Reciprocity is a two way street.

When I truly think about it, I don’t agree that laying off legitimate criticism is ethically justified. Let’s say Muchoverbal (fictitious) and Interverbal are having a fight, about whether a new autism treatment study is dangerous. Should they abandon their fight so that they can both better advocate on a shared issue. Training police to effectively differentiate being high from being autistic, perhaps? It produces a good, but I am not sure it is ethically justified.

But wait, couldn’t Muchoverbal and Interverbal still work together on the police matter? Unlike the treatment study, the gaps are not ideological. They could work together on the police matter and agree to disagree on the study. Really, the gaps are only emotional.

So….. why haven’t they already? Maybe there are other gaps here as well?

8 Comments:

Actually, many of the gaps between the those two groups are ideological. I don't think that the hub would give ground on calling autism a disorder anymore than AoA would give ground on vaccines.

Both groups are equally wrong but neither will give ground. How can you reconcile the idea that an injection damaged your child with the idea that autism is just a natural variation?

As for the majority of us who are outside of these two small groups, we run into the similar problems. While I don't believe that vaccines can, under normal circumstances, "cause" autism, I do believe that they can occasionally play a role in making autism worse in some children. I believe that they did so in two of my children (but not the third)

I know your response is going to be that the available evidence does not support what I am suggesting and I agree with that statement. But that doesn't mean that it doesn't happen.

Not that I think that it matters or will change anything, but I wrote about our experiences and my reasons for my belief here - http://autismjabberwocky.blogspot.com/2011/01/two-years-of-autism-jabberwocky.html.

So here is the question, can you go read what I wrote and at least be open to the idea that I could be right? Or are you going to tell me that I have to be wrong because it flies in the face of what you think to be true?

Because the real problems in the autism community have nothing really to do with vaccines or acceptance. The problem with the autism community is that all of the sides are so convinced that their ideas are the correct ones that they are unable to admit that they might be wrong. They are unable to admit that, when it comes to autism, there are no absolutes.

So, as Dr. Dawson said, the best way forward is with real answers to the puzzles of autism.

On a personal level, if science (or a doctor) can show me what caused my children's autism (or at least provide a plausible mechanism), I would be gladly admit that I am wrong. But the answers we have gotten so far create more questions than answers.

The Autism Hub isn't a group or a collection of politically/ideologically unified bloggers (I don't read AoA enough to know whether it fits this description). Why anyone would suggest that it is, is beyond me.

On the main subject, for the most part, the different political/ideological "sides" do not meaningfully differ when it comes to the standards of science and ethics they impose on autistics. This might help explain why our lives continue to be so difficult and precarious.

Michelle, no, lives of people with autism are difficult and precarious because they have autism.

None of the ideological "sides" of autism are stopping my older daughters from talking or any of them from being able to socialize. None of the sides are causing one of my twins to injure herself. None of the sides are causing the nutritional and other biological disruptions that they all suffer from. It is most likely autism that is causing all of those.

If you want to talk about an ideological difference, there is a big one. I believe that autism is a disorder and, in an attempt to help my children deal with it, they have ABA therapy. Ms Dawson would have me believe that ABA is somehow wrong or unethical. Yet it is precisely because of ABA that my children have made so much progress.

How can you resolve such differences?

OK, that is really a rhetorical question and not one that has an answer. And as I have blathered about this subject for long enough, I think I will stop bothering you now.

Repeating this because it was argued by both sides in Auton (is this a QED thing?), though with stronger wording:

"no, lives of people with autism are difficult and precarious because they have autism."

Also similar to arguments from the Respondent in the Tribunal case. There's a problem? It must 100% be autism. It can't in any way be a human rights problem, or a standards problem, or an ethics problem.

So I don't repeat myself, see this. I would write differently now, but it's close enough.

There's a difference between personally believing that approaches to autism are effective, and demanding major irrevocable changes to scientific standards, public policy and the law that affect all autistics. Not sure why this needs repeating.

"There's a problem? It must 100% be autism. It can't in any way be a human rights problem, or a standards problem, or an ethics problem."

I think you are conflating a few issues. Autism - and the disruptions it causes - is the root of the problem. If you take away the autism them the problems go away.

How society responds to people who have autism is another problem. But if we only change how society deals with autism, you are still left with the core problems of autism.

Now what percentage of the functional problems in each individual come from what particular factor is up for debate. Maybe for you most of the problems are societal but, for my children, most of their problems are medical, behavioral, and biological.

Who knows, after we deal with these problems I may be more concerned with societal problems. But even then I doubt I will forget the fact that, for many children, autism is medical problem.

As for demanding changing to standards for "autistics", you miss the point. People with autism are people, they are not a disorder. They deserve the same rights as everybody else.

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